Hi everyone, I have suffered from RLS for several years now am currently taking 600mg Gabapentin between 4-5pm and another 600mg at 9pm. This doesnt always help so I am getting a new set of bloods done to check my iron levels as I was taken off my iron tablets over a year ago. I want to speak to my doctor with reference to iron stores in the brain and was hoping someone could direct me to a page that I could share with my doctor as she has never heard of iron stores in the brain being measured before.
Many Thanks 😊
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heliso1
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Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
You are taking your gabapentin wrong. You should take 600 mg 1 to 2 hours before bed and the other 600 mg 2 hours before this. If this doesn't work then increase it by 100 mg every couple of days until it controls your symptoms. Take this extra 2 hours before the other 600 mg dose. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin."
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
I think that there is no way to measure Ron stores in the brain, we can only measure iron in the blood, and the precursors to iron, and make some kind of prediction or estimate or assumption about what is happening in the brain.
I take 600 mg of gabapentin at 4 pm, another 600 at 6 pm, and another 600 at 8 pm. I’ve been on this regimen for quite awhile now and my RLS is well managed. I hope if you up your dosage in this way it helps you, too.
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hoping to “Iron” things out!
Iron
Full iron panel results
Iron
Who knew there is an MRI that will show RLS sufferers have no iron in a the Substantia Nigra part of the brain.
